Outraged, Hurt, and a Little Scared!

[janetlee]

I hope it was okay to start a new topic post, rather than continuing in my original one, but if you read on, you may see why I felt the need to start anew!
The short story is that I am supposed to go to the local hospital on Sunday night at 9:00 for my sleep test. I am nervous as I am afraid that I won't be able to fall asleep, knowing that I NEED to sleep!
I am also nervous because I have anxiety disorder (and am on disability because of it) and hate to be away from my home! And lastly, I'm afraid that they won't find that I have sleep apnea after all of this! If I don't, then what's causing all my symptoms of fatigue, sleepiness, windburned tongue, dry mouth, severe snoring, etc? And on top of it all, it'll REALLY be bad because of what happened at the clinic today! I have NEVER NEVER NEVER been so disrespected as I was earlier today! I went in to see the clinic's "physician assistant" (similar to a nurse practicioner) Rod, who I've always seen since I started going there over a year ago. He saw that I had requested a sleep study test. He wanted to know why and I told him that I believe I have sleep apnea and told him all my symptoms. He goes on to tell me how he doesn't usually order these tests because they're very expensive. I asked him if medicaid covers it and he said that he believes it does, but would I pay for it if it didn't? I told him that if I could possibly pay for it, then yes, I would! He then tells me that he usually only orders these tests for people that have to work and so are unable to take a nap during the day! I explained that I am still tired and sleepy AFTER a nap too and that I'm exhausted 24/7. I said that even though I am unable to work secularly, I still like to think that my life is worth something! By this time I'm all teared up. My Mom, who had come with me for moral support, had to use Christian restraint to keep from telling him off! Anyhow, he asked me what difference would it make if I were diagnosed with sleep apnea!!! I replied that hopefully I could be put on a CPAP machine. He looked at me in a condescending manner and said that they would probably just say that I needed to lose weight and would recommend surgery to remove soft tissue and such, but it could grow back as scar tissue. I told him that I wasn't too keen on the idea of surgery anyhow as I'd done research and read that it doesn't help most people all that significantly. After all was said and done, he goes on to say that he'll order me the test since it was apparent that I was afraid that I'd be asleep and stop breathing! I DID NOT SAY THAT AT ALL! (I had said that I believe I quit breathing while I'm sleeping, as is common in sleep apnea!)
By this time, I was really in tears and told him to just forget about it and marched out of the exam room! I went to the front desk, still upset, and asked what my co-pay was. There was a lady there that asked me what was wrong and I managed to sputter out what had happened. She was mad too! She went to get Rod and he was PO'd because she had ORDERED him to give me an order for the sleep study! He grumbled that he usually has a person go to a pulmonary doctor first, before ordering a sleep test, but he had been outranked!
As it turned out, the lady that "outranked" him was married to a man that had to be put on a CPAP machine himself and she was familiar with how dangerous it can be to suffer with sleep apnea! I had a 97% oxygen saturation rate (I don't know the proper words) with that test where they clip it onto your finger to measure it, but this lady said her husband's had shown about the same as mine! The tech had told her that her husband was so bad that he was suprised that he hadn't died in his sleep!
So I left the clinic with a sleep study test order and with a hostile PA probably hoping I'll test out as "normal"!
When I go back to the clinic on 8-6-09, I will see a lady doctor thankfully!
What will I do if I am not able to go to sleep?? The doctors at the clinic do not have hospital privileges (it's a charity clinic as most patients are either uninsured or are on medicaid). I don't know if I'll be allowed a sleeping pill or not. Also, do I take my meds with me? I'm on Paxil, Buspar, Metformin, and 2 hypertension drugs.
Any words of advice or even commiseration would be MOST appreciated! I am so wiped out after this bad day that I just wanna roll up in a ball and crawl in a hole!
janet

[Yoda]

What a bad day. You came to the right place. The people here are caring and helpful.

No one likes the idea of the sleep study. I thought I would not sleep and I did not sleep much at all. But, I slept enough to see that something was going on.

Regarding your question about medications. Call the sleep lab tomorrow and ask about your medicines. Also, you might ask for Ambien. They let me take Ambien for the sleep study. Ask any other questions you might have about the lab and the process. They are usually experienced in dealing with the sleep study anxiety.

I know it is hard, but separate your anger at the PA from the sleep study itself. You did the right thing standing up for your health.

Good luck!

[Sleepyheadgirl]

Wow, sorry you had such a bad experience. That assistant, or whatever he is, appears to know NOTHING about sleep apnea. I'm so glad you got a referral in the end. I'm not sure what the protocol is with where you will get your test, but I would think that they will contact you with the date of your test, and give you a list of do's and don'ts, i.e. bring all your medications with you, don't drink any alcohol or have caffeine that day, etc. If they don't give such instructions (I would be pretty surprised if they didn't, it is essential to the success of the test that you follow procedure), then I would certainly contact them for the information. Hopefully they will treat you with more sensitivity and respect than the fellow today did!.

I too was afraid that I wouldn't be able to sleep the night of my test. They will likely tell you not to nap the day of your test, so that should help. I was surprised that I did sleep, apparantly long enough for them to determine that I did have sleep apnea. Hopefully you will be able to relax enough to get some sleep that night. (I'll say a prayer for you)

All the best to you in your search for answers to your symptoms!

[katcw]

Many people think they *don't* sleep in their sleep studies, but the techs assure them that they actually did sleep at least for awhile. If it is okay with the sleep center, have a cup of chamomile tea or some melatonin or kava before going over there, and they may help you relax. And let us know how it goes!

Do not go back to Rod. Do work with the desk person and doctor if you can. He was waaaayyyy out of line.

[Muse-Inc]

Your terrible experience today is a telling story of how ignorant even medical professionals are about apnea! I am sorry you were treated so shabbily by someone who should know better -- your experience is worth reporting to your doctor as that PA needs to be educated about sleep apnea, its symptoms, its potentially fatal consequences if left untreated. There is no excuse for his behavior.

BTW, for what it's worth 'cause I'm not a medical professional but it sure sounds to me like you have many symptoms of severe sleep apnea.

...He goes on to tell me how he doesn't usually order these tests because they're very expensive....

His job is to help the doctor by interviewing patients and collecting their vitals. If you report a serious condition, he should be reporting that...period...he cannot and should not belittle any concern you have. If you walked in and reported having serious indigestion, some shortness of breath, and pain that radiates to your back, would he question your perception and possibly let you die as so many women do because no one suspects they're haing a heart attack? Yes, it might be simple indigestion and some anxiety BUT without seriously investigating, you could be in serious danger. The same is true for your complaints caused by obstructive sleep apena. He is not qualified to order nor is he licensed to order tests.

...medicaid covers it and he said that he believes it does, but would I pay for it if it didn't?

This is a coverable if symptoms warrent investigation; he is not an MD and cannot make a diagnosis or rule out a cause.

...He then tells me that he usually only orders these tests for people that have to work and so are unable to take a nap during the day...

More ignorance of apnea...more sleep doesn't help the condition.

...he asked me what difference would it make if I were diagnosed with sleep apnea!!! I replied that hopefully I could be put on a CPAP machine. He looked at me in a condescending manner and said that they would probably just say that I needed to lose weight and would recommend surgery

What an idiot! Very few have apnea that is improved following weight loss. Surgery is less than 50% successful; if unsuccessful, many are no longer great (OK but not great depending on the skill of the surgeon) candidates for CPAP therapy.

...What will I do if I am not able to go to sleep? I don't know if I'll be allowed a sleeping pill or not. Also, do I take my meds with me?

These are good questions to ask the Sleep Clinic staff. I thought I wouldn't sleep, I did. I took my pillows, my prescriptions, PJs, slippers, clothes for the next day. I got to shower the next morning, so I took my hair stuff and dryer.

...I'm on Paxil, Buspar, Metformin, and 2 hypertension drugs

These may be reduced or maybe even eliminated if the cause of the symptom for which they were prescribed is poor sleep from apnea...does that make you feel hopeful? It should, anxiety, depression, thyroid problems, wt gain, irritability & mood probs, hypertension, diabetes are all side effects that commonly follow from years of undiagnosed apnea. I'm proud you're getting the test...don't let any ignorant person dissuade you from that Sleep Study regardless of how many letters follow his or her name.

...just wanna roll up in a ball and crawl in a hole...

Ah, Janet, don't let the dumb ones make ya feel bad! When you feel horrible as all of here know, it's a real challenge to stay positive..so easy to just give in and suffer...DON'T! Instead, get angry that you were treated so shabbily by an ignorant medical professional...you are better than that nincompop! Many of us when faced with challenge and in the grips of having events that interrupt our sleep, as my family and friends will heartily attest, turn into meanies, aka first class #itches with nasty tongues that speak in biting sarcasm and venomous scorn, convered with long sharp porcupine quills that we'd like to shoot at those who seem to go out of their way to make us miserable, and develop an aura that says don't mess with me 'cause I'll do everything to ensure you lose. Ever hear of Dr Jekyll and Mr Hyde? Could be worse

[BeanMeScot]

You've got plenty enough of the symptoms of apnea to have it. Including the anxiety and hypertension. I am glad you didn't let Rod's attitude dissuade you from getting your referral.

It is rare that someone doesn't sleep at all during a sleep study. Sometimes they think they don't but they do. They can get enough information with you getting little sleep. They can also give you Ambien if you have an issue. Good luck!

[elg5cats]

see the clinic's "physician assistant" (similar to a nurse practicioner) Rod,
janet

Janet, the description of Rod suggests he was extremely unprofessional and out of line in his comments towards you. As a physican's assistance he is practicing similiar to a physican under the supervision of a physican.........as you reference similiar to an advanced nurse practioner. Medical professionals have no right to be disrespectful to patients and if he or she has difficulty with disrespect, they need to leave their "off stage" behavior outside of the exam room. I suggest you give Rod feedback his behavior was offensive and let him know you will no longer submit yourself to his lack of skills. Then notify his superior of his inappropriate behavior and is unemployed status with you. I'm so amazed at health care providers and other professionals who seize the opportunity to be abusive...I recently gave a physican who was rude and without the ability to use reasonable listening skills feedback. I simply informed her I was shocked by her inability to listen to me as a patient and her judgemental comments are unwelcomed as I provided examples. I told her the second appointment was another chance should she have had a off day at the first appointment but now was assured it wasn't an off day. I explained I expect more from professionals I employ and I will not schedule any additonal appointments with her. She got all ruffled and insisted she was not judgemental. She then told me when I could come back to which I responded, perhaps you didn't understand but I will no longer see you as I value effective communication in professional relationships.....I will not see her again, EVER!

elg5cats

[sleepyprm]

I echo all the sentiments stated here.... NO health "professional" should be talking to you that way. Do give the feedback recommended, and don't be afraid to stand up for yourself. Whe I went for my sleep study, I took my prescriptions with me. They said they "preferred" that I not take my nightly med (Amitryptiline at the time), but they did not prohibit it. Don't let your anxiety get the best of you, and remember they work for you, you are paying their salaries. You can remain in control of your health and your treatment, in partnership with the health community who is there to get to the root cause of difficulties and help make your life and health better. Hang in there and let us know how it goes.

[Rustyolddude]

The short story is that I am supposed to go to the local hospital on Sunday night at 9:00 for my sleep test. I am nervous as I am afraid that I won't be able to fall asleep, knowing that I NEED to sleep!

You doctor should have drug co. samples of sleep aids like Ambien that you can take the night of the study, don't take any OTC sleep aids, they can skew the results. Express your concern in advance and see if he will accomodate you. Take all your other meds as usual. No stimilants the day of the study, no caffeine, no cola, no chocolate, no OTC drugs that have stimulant effects like Claratin-D, or other decongenstants. Read the label on any pain killers first, some contain caffiene. Take your pillow, and any other comfort items, even your teddy bear if you sleep with one Eat a normal meal, something that normally doesn't cause you digestive distress. Watch your fluid intake. In the mean time, work out this frustration so you don't go in all worked up.

[allymshop1]

Janet,
I have to tell you that I loved my sleep study. It was a breeze and the people were so night. I took an ambien and slept on my back all night. I woke up, met with the Dr. and left with my equipment. Actually the respiratory sales person who was also certified brought the equipment to my home the same day and set it up>

This P/A was incompetent and insensitive and doesn't deserve to be in health care. I believe the sleep cllinic specialists will be totally different because this is all they do and it is there livelihood. Good luck and relax. I had an enjoyable night and experience away from home.

[kteague]

I have been similarly disrespected by a doctor in the past, and I was absolutely undone. Here I was desperately ill yet berated by words that were nothing short of mental abuse. I hate to hear of anyone else be subjected to such treatment. That person apparently feels level of care deserved and value of life and health is related to socioeconomic status. That attitude is dangerous in a health care provider, and in my opinion should be reported. You can be sure if he treated you that way, you are not the only one - it's a general mindset. Essentially what he said to you was that since you don't work, you deserve to live with the risk of heart damage, stroke, hypertension, diabetes, cognitive impairment, poor mental health and reduced quality of life. If he does happen to be that ignorant of the effects of sleep apnea, it's no excuse - then he's in the wrong line of work.

Hopefully the person who stood up for you has relayed your concerns to management. After my experience, I sent a letter to the medical director of the facility and requested a meeting. I did find that this rogue doctor kept his dirt under cover, and did not represent the mindset of the group. The medical director was appreciative of being made aware so they could monitor his conduct and review case files to look for any patterns of behavior.

Find out before you go to the study if your doctor wants you to take something to help you sleep, and if you need to get it in advance or if the sleep clinic will dispense it. Surely you will doze at least a little during the night. Get up real early that day, get some activity in the afternoon, be sure to not nap, and you'll probably do better than you expect. In some of my studies I felt as if I barely slept, and didn't even doze off in one till nearly 3am, but it was enough for them to see the problems.

Since OSA keeps shooting stress hormones into your system, if you do have it and treat it, you may even find your anxiety levels improved. Some others have reported that benefit on here.

Best wishes and please do keep us informed.

Kathy

[mars]

Hi Janetlee

Sometimes I wonder whether we are on a journey of recovery, or a journey of discovering just how many health professionals are ignorant and abusive (and dangerous to us). I now have a great General Practitioner who appreciates me taking responsibility for my treatment of different health problems, with her help. So far I have sacked my last General Practitioner, my ex Sleep Doctor, my Gastroenterologist, and 3 DME consultants.

So I think you have done a terrific job in looking after yourself, and I know you can continue to do that.

Just to reinforce what others have said -

I only had a few hours sleep during my study, but it was enough. Because of the noise in the sleep lab, and the anti-sleep pillows they supplied, I had to take temazepan to get any sleep.

Take your own pillow(s), and any other sleep aids that you use. For example (sleeping on my left side) I have a cushion in between my legs , and a cushion to support my right arm.

Take ear plugs just in case the sleep lab technicians lack respect and commonsense and make a lot of noise during the night.

Now for the most important - do not try to get to sleep. Just relax your thinking, maybe wander off into a pleasant fantasy, and enjoy your free time, when you have nothing to do but rest easy. You will sleep in your body's own good time, so you do not have to worry about it.

Do not worry about all the attachments to your body, they will take care of themselves, and if one comes off then a technician will attend to it.

Let your anger evolve in to the assertiveness you need to get the treatment you want.

Best wishes

Mars

[jnk]

You have every right to be outraged and hurt. He may not have meant to hurt you. But ignorant people sometimes hurt us, unfortunately. Sounds like another one of those big shots trying to sound like he knows something about something he knows nothing about. Just be happy with yourself that you didn't slap him.

I found my sleep studies to be kind of fun. If felt like I was being a kid again looking forward to staying in a motel. I just kept telling myself that there was absolutely nothing I could do to "fail" this test, since all I had to do was nothing, and I'm really good at doing nothing!

I "stacked the deck" a bit to make sure I got to sleep. I got up a little early the morning before the night of the sleep study and I got a little more exercise than I usually do. Then, the evening before the study, I told myself I was starting a one-night mini-vacation, since I would be sleeping away from home, and I made sure I had a nice relaxing meal to start off my mini-vacation. I figured my job was to relax and let everyone else do the work. I figured the pressure was on them, not me. All I had do was be myself and do what I do every night.

Both studies went well. But like I said, I'm really good at doing nothing.

I know everyone's mind doesn't work the way my odd mind does, but I thought I'd throw out my experience and thought process for whatever it is or isn't worth.

I'm sure you'll do great.

jeff

[dsm]

JanetLee,

Wow, quite an experience & not one to want a repeat of.

You are quite right to push the sleep study issue & your weight should not be a reason for Rod to use as justification
for not following through. Kind of like him saying, "if apnea is harming you its your problem & I won't help - go lose
weight". Your loud snoring is a damned good starting point to justify a sleep study.

Some of these people in the profession are going to be judgmental but its your life & health at risk not his. There is
a lot of evidence linking weight gain to sleep apnea & triggering a vicious cycle of feeding on itself. Weight goes up more
apnea gets worse, apnea gets worse - person gets depressed, weight goes up as a side effect.

Also, don't worry about not having apnea in the sleep test, you can be very sure you will get a high AHI score so
just tell yourself repeatedly than what you are going there for is to find out the severity, that should help you
reduce your anxiety.

Good luck with this.

If it goes as it looks like it will, you will have a mechanism to help you but you really do need to also take
on anything to boost your fitness. Lets hope a cpap gives you that needed incentive.

DSM

[janetlee]

I want to say a HUGE Thank You to everyone that took the time to reply to my post! Your encouragement, insights, and fellow-feeling all mean the world to me!
I do believe that Rod, the PA, will already have gotten chastisement from the powers that be there at the clinic. You should've seen the expressions on the faces of the office staff directed at him! No one seems to like him and the lady that "outranked" him seemed to dislike him particularly! Anyway, I will be seeing a different person altogether when I return on the 6th of August!
Why a person of his beliefs (looking down on low income people) works in a charity clinic I'll never understand.
But all is okay with you guys on my team for support!
I think it is neat the way you show what sorts of equipment you have for your sleep apnea listed on your replies! It makes me think of my Dad when he used to talk about the classic cars he'd owned as a young man!
I hope that if I get to have a CPAP that it'll make a big difference in my life! I'm so tired of being tired all the time! I even dreamed last night that I was so exhausted that I could barely walk! Weird, huh?! It is my hope that I'll get some energy back and maybe even lose a little weight. I am obese, I won't lie, but I'm not so overweight that people look at me when I walk into a place. I buy clothes right off the rack at Wal Mart, so it's not as if I weigh 600 lbs and consider lifting a TV remote as exercise! And even if I were that big, it would be wrong for Rod to judge me, since obesity is not just a lazy person's problem! Rod isn't skinny folks! He's obese too!
Okay, Janet, quit yakking over Rod's faults! LOL!
I will keep you informed as I get more results to post. In the meantime, I will just keep using those breathe right nose strips...which usually end up coming off in the middle of the night anyway! Sheesh!
janet